Hemochromatosis and Autoimmune Conditions

[mcb]

I saw a new primary care doctor today (I haven't had one for the better part of a year) and she agreed that my iron panel numbers, combined with my symptoms, warrant a closer look by a specialist. She gave me a physical, and everything was normal except for elevated ketones in urine. :) I had already told her about my low-carb KD, so that was no surprise. My heart checked out OK (listening + EKG), which is a relief with all the fatigue problems I have been having lately.

This doctor used a slightly different formula for iron saturation to come up with 40% instead of 42%. (I didn't get the formula.) Either way it's at the high end of normal, and the presence of other hemochromatosis symptoms becomes the deciding factor. I'm really glad I read the book -- if you don't know what symptoms to mention then there is a greater chance of missing iron overload.

 

[Gawan]

Keto-adaptation and fuel "partitioning" (glucose vs. fats, and where they are used) are another matter. I don't want to take us way off topic here, though, and I have to leave for a Dr. appointment in a minute or two anyway. I can say a little more later if you'd like.

Personally I think this would be great and eventually a great addition for the keto-topic itself (eventually this post belongs to there too)? As my experience is and after some adjusting time to the diet, that I can eat about 500 gr of meat on a single day and still being in ketosis (it was about 2.6mmol/l in the night). It was not my attention doing that, but too low blood sugar drove me to that. At least for me there is also not a entire zero carb diet possible, cause butter contains carbs and tea bags which add to ~5gr daily, so that the body uses, as you wrote, both systems all the time, only that it is easier staying in ketosis or so it seems.

 

[Aliana]

I saw a new primary care doctor today (I haven't had one for the better part of a year) and she agreed that my iron panel numbers, combined with my symptoms, warrant a closer look by a specialist. She gave me a physical, and everything was normal except for elevated ketones in urine. :) I had already told her about my low-carb KD, so that was no surprise. My heart checked out OK (listening + EKG), which is a relief with all the fatigue problems I have been having lately.

This doctor used a slightly different formula for iron saturation to come up with 40% instead of 42%. (I didn't get the formula.) Either way it's at the high end of normal, and the presence of other hemochromatosis symptoms becomes the deciding factor. I'm really glad I read the book -- if you don't know what symptoms to mention then there is a greater chance of missing iron overload.

I am glad you found a good doctor who is listening to you and will actually help. It's obvious mine has not got a clue, they did not even bat an eyelash at my high ferritin levels. Unfortunately I have not gotten the book yet, so I need to read it and then talk to the doctor again if the fatigue does not improve.

It is so strange because a few months ago I had so much energy and then suddenly it was all gone :( Megan, did your fatigue come on suddenly or has this been ongoing along with other issues?

 

[mcb]

Keto-adaptation and fuel "partitioning" (glucose vs. fats, and where they are used) are another matter. I don't want to take us way off topic here, though, and I have to leave for a Dr. appointment in a minute or two anyway. I can say a little more later if you'd like.

Personally I think this would be great and eventually a great addition for the keto-topic itself (eventually this post belongs to there too)? As my experience is and after some adjusting time to the diet, that I can eat about 500 gr of meat on a single day and still being in ketosis (it was about 2.6mmol/l in the night). It was not my attention doing that, but too low blood sugar drove me to that. At least for me there is also not a entire zero carb diet possible, cause butter contains carbs and tea bags which add to ~5gr daily, so that the body uses, as you wrote, both systems all the time, only that it is easier staying in ketosis or so it seems.

The more I read (and I spend a lot of that time in the researchers' blogs), the more I realize that we may still have a long way to go to thoroughly understand what goes on, especially with regard to individual differences.

If you are trying to correct blood sugar issues through diet (as I had been trying to do for quite a while), you may just find that diet is not the cause of the dysregulation and that you can't control or correct it that way -- something's broken! Increasing protein or cutting out even more carbs may therefore not be helpful. You can eliminate dietary carbs, but you cannot eliminate glucose as fuel -- you would die if you succeeded in doing so. If your dietary carb intake is very low then your liver must be able to make up the difference.

I am also learning that there are a great many factors that can figure into being healthy or diseased. Food quality is important, and so are many other things. I would say that high quality, natural food is a necessary but not a sufficient condition for health.

 

[nicklebleu]

I am also learning that there are a great many factors that can figure into being healthy or diseased. Food quality is important, and so are many other things. I would say that high quality, natural food is a necessary but not a sufficient condition for health.

I completely agree - I also have a tendency to view everything through the lens of nutrition.

While nutrition certainly is a big one, I think one factor that we constantly underestimate is our mental state, which, massively influences the way our body works, or not. Also the constant barrage of toxins, pesticides, noxious gases, EMF waves etc. may have a huge impact on our health without us being able to monitor or influence that.

 

[mcb]

I am glad you found a good doctor who is listening to you and will actually help. It's obvious mine has not got a clue, they did not even bat an eyelash at my high ferritin levels. Unfortunately I have not gotten the book yet, so I need to read it and then talk to the doctor again if the fatigue does not improve.

It is so strange because a few months ago I had so much energy and then suddenly it was all gone :( Megan, did your fatigue come on suddenly or has this been ongoing along with other issues?

While I tend experience fatigue on and off all the time, I have exaggerated fatigue problems every spring to one degree or another; this spring has been a doozie. I have pollen allergies that seem to affect my entire system. This year I also had a viral infection that I recovered from just as the allergies were starting.

I suspect that I have issues with mucous linings all over -- nose, sinuses, lungs, GI tract, and even urinary tract. I breathe in pollen, which produces mucous that traps the pollen, and some of that then passes through my GI tract spreading inflammation. Or so I would guess, from what it feels like. Sometimes it feels like there is a small fire burning inside, kind of like eating spicy food.

In a milder year, I might have relatively few problems. I don't know what makes the difference from year to year. The worst time tends to be mid-April to mid-May, although it may be longer in some years.

 

[Laura]

Received my EDTA, Lactoferrin and the book on Chelation this week. Have taken two capsules of the EDTA for three days this week and it seems to be working already, I think. I have felt so exhausted the past month that I could just manage to go to work and then drag myself back to the sofa to read for the evening. I now have a bit more energy, so am hopeful things will continue to get better.

It does the same for me: I feel better pretty quickly.

Dr. Gordon mentions in the book that he believes that everyone should be on oral chelation forever because it takes so long to detox and also because the EDTA has so many other benefits other than removing heavy metals. He seems to think we should be taking this every day along with the supplemental minerals (at different times). However, from what I have read here, the protocol should be to take it for three days per week and then take the minerals to replenish for the remaining four days.

Well, the info says that the EDTA does its work and exits the body within a few hours, so maybe it is possible to take it first thing in the morning, and then take minerals with the evening meal to replace the good stuff that may have been taken out.

So I am wondering, since I need to get my Ferritin down as quickly as possible and cannot do the decanting, should I try to continue taking this daily for awhile?

I might try it myself for a week or so and see how it feels.

Also have contacted my Doctor and have asked if they do the Calcium IV EDTA infusions as that should help bring it down faster. Am also taking circumin, Quercitin and ECGB (green tea extract). Don't want to overdo things but am so tired of being tired!!!

If your doctor would be willing to do that, why would he not do a few phlebotomies?

 

[Voyageur]

My copy of The Iron Elephant just came in the mail, so hopefully some of the rest of you who've been waiting will see your copies soon too.

Mine arrived also.

After getting into it last night for a bit, right from the start, in the accolades, one physician remarks about this books importance, and how by the year 2000 knowledge of this will be much more known. Goodness me, 13 years later it seems it is the opposite. It seems that knowledge of this common illness was ensured to remain in ignorance; can't have simple diagnostic tests ruin such a rosy pharmaceutical industry con. The associated illnesses of hemochromatosis are astounding, and in the main, treated every which way (to the misfortune of sufferers) then with common sense.

This remarkable book is indeed a "bible", as one physician remarked. Shame on the great many other physicians for not researching hemochromatosis first as a causation to peoples ills.

What a wake up book.

 

[Tomek]

I ordered some DSMA a few weeks ago and I'm waiting to have a perfectly clean detox pathway before attempting to treat myself against heavy metals. Also, some members reported anxiety and even "crazyness" during the DMSA chelation, and I'm prone to anxiety and panic attacks, so... What's this "chelation book" you're talking about ? I wanna have as much informations as I can before submitting my body to something as harsh. Thanks !

 

[Michal]

Hi Tomek,
I think "this chelation book" is "Detox with Oral Chelation: Protecting Yourself from Lead, Mercury, & Other Environmental Toxins" by David Jay Brown and M.D. Garry Gordon (Author).
http://www.amazon.com/Detox-Oral-Chelation-Protecting-Environmental/dp/1890572209
and mentioned in this thread:
http://cassiopaea.org/forum/index.php/topic,20265.msg415586/topicseen.html#msg415586

One interesting comparison between detoxifying chelators I have found on this page:
http://www.townsendletter.com/May2009/chelation0509.htm related to Iron overload
Unfortunately the source of the graph comparing chelators is not mentioned.
From that comparison looks like EDTA is the best choice for Iron overload chelation.

 

[Gawan]

I ordered some DSMA a few weeks ago and I'm waiting to have a perfectly clean detox pathway before attempting to treat myself against heavy metals. Also, some members reported anxiety and even "crazyness" during the DMSA chelation, and I'm prone to anxiety and panic attacks, so... What's this "chelation book" you're talking about ? I wanna have as much informations as I can before submitting my body to something as harsh. Thanks !

I don't know if it is this one: "Detox with oral Chelation David Jay Brown & Garry Gordon, M.D." but it contains no clear protocol (or I coulnd't find one) and concentrates mainly on EDTA but also mentions other chelators such as DMSA. At least Laura mentioned to have the following other stuff available and which should be taken before starting the chelation.:

* Alpha lipoic acid
* Chromium picoinate
* Selenium
* Zinc
* Potassium (low dose)
* Niacin (low dose)
* Magnesium
* a general mulitvitamin without iron
* Copper

Is there a specific topic which describes it further how to go on and what to take care of?

Keto-adaptation and fuel "partitioning" (glucose vs. fats, and where they are used) are another matter. I don't want to take us way off topic here, though, and I have to leave for a Dr. appointment in a minute or two anyway. I can say a little more later if you'd like.

Personally I think this would be great and eventually a great addition for the keto-topic itself (eventually this post belongs to there too)? As my experience is and after some adjusting time to the diet, that I can eat about 500 gr of meat on a single day and still being in ketosis (it was about 2.6mmol/l in the night). It was not my attention doing that, but too low blood sugar drove me to that. At least for me there is also not a entire zero carb diet possible, cause butter contains carbs and tea bags which add to ~5gr daily, so that the body uses, as you wrote, both systems all the time, only that it is easier staying in ketosis or so it seems.

The more I read (and I spend a lot of that time in the researchers' blogs), the more I realize that we may still have a long way to go to thoroughly understand what goes on, especially with regard to individual differences.

If you are trying to correct blood sugar issues through diet (as I had been trying to do for quite a while), you may just find that diet is not the cause of the dysregulation and that you can't control or correct it that way -- something's broken! Increasing protein or cutting out even more carbs may therefore not be helpful. You can eliminate dietary carbs, but you cannot eliminate glucose as fuel -- you would die if you succeeded in doing so. If your dietary carb intake is very low then your liver must be able to make up the difference.

Right now it is a difficult phase for me and eventually what is "broken". Since my body seems to switch back to summer time (at least two weeks ago it started) and insulin rates did decrease (in winter it is the opposite), so it needs adjustment time to figure it out and risks hypoglycaemia of 2.6mmol/l (48 mg/dl), so the emergency eating program is then the main solution.

Another thing I noticed since I took butter out (two days back) my insulin rate decreased suddenly about another 30% (months before I had a rate of 150%). So I went in the last weeks and within days from 24 IU/per day to >12 IU/per day, but it still needs correction and my body needs also to get used again to lower BGs at about 4.5mmol/l (81 mg/dl). That my body reacted that fast may indicate that butter played a role in it, but it may be as well the summer correction.

Also starting the chelation therapy beforehand could be difficult, cause ALA does decrease insulin and niacin increases it to my experience.

 

[Laura]

I don't know if it is this one: "Detox with oral Chelation David Jay Brown & Garry Gordon, M.D." but it contains no clear protocol (or I coulnd't find one) and concentrates mainly on EDTA but also mentions other chelators such as DMSA. At least Laura mentioned to have the following other stuff available and which should be taken before starting the chelation.:

* Alpha lipoic acid
* Chromium picoinate
* Selenium
* Zinc
* Potassium (low dose)
* Niacin (low dose)
* Magnesium
* a general mulitvitamin without iron
* Copper

WRONG!!!!

You do take the alpha lipoic acid WITH the chelator and during the remineralization, but you do NOT take the minerals before chelation nor close afterward or you will take up the binding capacity of the chelator with the easily available minerals you have just paid money for instead of the chelator extracting the heavy metals from your tissues!!!!

PLEASE READ CAREFULLY!!!

 

[Gawan]

I don't know if it is this one: "Detox with oral Chelation David Jay Brown & Garry Gordon, M.D." but it contains no clear protocol (or I coulnd't find one) and concentrates mainly on EDTA but also mentions other chelators such as DMSA. At least Laura mentioned to have the following other stuff available and which should be taken before starting the chelation.:

* Alpha lipoic acid
* Chromium picoinate
* Selenium
* Zinc
* Potassium (low dose)
* Niacin (low dose)
* Magnesium
* a general mulitvitamin without iron
* Copper

WRONG!!!!

You do take the alpha lipoic acid WITH the chelator and during the remineralization, but you do NOT take the minerals before chelation nor close afterward or you will take up the binding capacity of the chelator with the easily available minerals you have just paid money for instead of the chelator extracting the heavy metals from your tissues!!!!

PLEASE READ CAREFULLY!!!

Oh, sorry. And thank you for correcting my twisted statement.

 

[Pierre]

Well, the info says that the EDTA does its work and exits the body within a few hours,

EDTA half-life is 42 minutes, So EDTA works rather quickly.

That's why right after taking EDTA you usually feel a sudden urge to drink and to pee (stimulation of the renal function).

 

[Zadius Sky]

When I had my blood drawn for a ferritin test on 15th of April, I didn't had an iron panel test done. So, yesterday, I got my blood drawn at the LabCorp for both ferritin test and "Anemia Panel" that I was able to afford. I wanted to see the difference in a span of a month with my ferritin levels and to see other results for the first time. My last result of ferritin was 140 ng/mL.

Since the 15th of April, I donated my blood at Red Cross on the 20th and after that, I had been taking one capsule of EDTA per day for three times a week (no aftereffect experienced). I wouldn't want to overdo it.

So, here's my results from yesterday (15th of May - fasted):

Anemia Profile A
Iron Bind.Cap.(TIBC): 334 ug/dL
UIBC: 158 ug/dL
Iron, Serum: 176 ug/dL (flagged as high)
Iron Saturation: 53%

CBC, Platelet Ct, and Diff
WBC: 5.6 (x10E3/uL)
RBC: 5.38 (x10E6/uL)
Hemoglobin: 16.3 g/dL
Hematocrit: 48.0%
MCV: 89 fL
MCH: 30.3 pg
MCHC: 34.0 g/dL
RDW: 13.4 %
Platelets: 224 (x10E3/uL)
Neutrophils: 49%
Lymphs: 39%
Monocytes: 8%
Eos: 3%
Basos: 1%
Neutrophils (Absolute): 2.8 (x10E3/uL)
Lymphs (Absolute) 2.1 (x10E3/uL)
Monocytes(Absolute) 0.4 (x10E3/uL)
Eos (Absolute) 0.1 (x10E3/uL)
Baso (Absolute) 0.0 (x10E3/uL)
Immature Granulocytes: 0%
Immature Grans (Abs): 0.0 (x10E3/uL)
Reticulocyte Count: 1.5%

Ferritin, Serum: 99 ng/mL

From 15th of April to 15th of May, my Ferritin level dropped from 140 to 99 (about a 40-drop difference). The only thing that was flagged in my results as "high" is my iron, serum (176 - outside of 40-155 range). My understanding of this latter result isn't a good thing as it'd mean Hemochromatosis or Vitamin B-12 deficiency (I've never taken B-12 before). I could be wrong.

It's nice to see my Hemoglobin level haven't changed in a slight since my donation (I've been taking B6 regularly). I'm planning on donating my blood in mid-June as I just received my donor card yesterday and I'm marked as a "valued donor," as apparently my blood would be needed. Perhaps, after the next donation, I'll cease taking of EDTA and take the next test in early July to see where I'll be at (as I wouldn't want to get too low).

Although, I'm a little concerned about my Reticulocyte count (immature red blood cells).

Along with my result, there's a note regarding the "ferritin reference interval:"

**Effective May 20, 2013, Ferritin reference interval**
will be changing to:

Male
0 − 5 months: 13 − 273 ng/mL
6 − 12 months: 12 − 95 ng/mL
1 − 5 years: 12 − 64 ng/mL
6 − 11 years: 16 − 77 ng/mL
12 − 19 years: 16 − 124 ng/mL
Adult: 30 − 400 ng/mL

Female
0 − 5 months: 12 − 219 ng/mL
6 − 12 months: 12 − 110 ng/mL
1 − 5 years: 12 − 71 ng/mL
6 − 11 years: 15 − 79 ng/mL
12 − 19 years: 15 − 77 ng/mL
Adult: 15 − 150 ng/mL

That's a big gap for an adult between male (up to 400) and female (up to 150) - should they be roughly the same? For men, there's a big difference between "16 − 124" for 12-19 year-olds and "30 − 400" for adults.